National Center for American Indian and Alaska Native Mental Health Research

Data Access Committee

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BACKGROUND AND RATIONALE

The National Center for American Indian and Alaska Native Mental Health Research (NCAIANMHR) is dedicated to the advancement of the highest quality research with and for American Indian and Alaska Native populations. Within this context, the NCAIANMHR works with American Indian and Alaska Native communities in pursuing comprehensive and relevant research programs. In addition, the NCAIANMHR works with related research training opportunities that address a number of theoretical and programmatic issues in the assessment, epidemiology, management, and prevention of serious psychological dysfunction and major mental illness among American Indians and Alaska Natives.

Each research project of the NCAIANMHR produces data. These data are a unique resource for a number of reasons. First and foremost, they have practical importance for helping prevent, detect, diagnose, and treat mental health problems among Indian and Native people. Second, the data can be used to leverage needed services in American Indian communities or funding for additional study. Third, the data are a valuable resource for the advancement of scientific knowledge and the professional advancement of research scholars.

Managing access to the NCAIANMHR project data is not without complexities. Within the circle comprised by our research staff, community partners, research colleagues, and other associates, many degrees and types of involvement exist in the various projects--any of which may lead to a legitimate claim to data. If more than one person is interested in addressing a particular research question with those data, conflicts can arise. However, given how research findings arising from study with American Indian people have been used in the past, equally importantly, are serious concerns about the effects that naively reported research findings have on the public and local images of American Indian individuals, communities, and tribes.

In an effort to prevent future conflict or misuse of the data, the Data Access Committee (DAC) has been formed to answer the following kinds of questions for specific requests for data.

Is the proposed use of the data practically and scientifically worthwhile?

How does the applicant rate in terms of priority in access to the data?

Does the person or group who wishes to use the data (to be referred to as the applicant) have a valid procedure to investigate a well defined research question or a concrete plan to use the data for a well defined policy or grant-writing project?

Does the applicant have the ability and resources to implement promptly and successfully the planned use of the data--for example, to do the analyses correctly or to present the findings accurately?

If not, what kind of assistance and support should the National Center provide?

How will the confidentiality of individual research subjects and the research communities be assured? How will the results be shared with the National Center and the research communities?

What kind of assurances can be made that the data will not be used naively and thereby misrepresent the experience of American Indian tribes, communities, and individuals?

APPLICATION GUIDELINES AND CRITERIA

Individuals and groups interested in access to one or more of the databases at the NCAIANMHR must make an application to the NCAIANMHR's Data Access Committee (DAC). Applicants must demonstrate to the DAC that they are responsive to the stated goals of the NCAIANMHR and that they will fulfill the requirements as set forth in this document. Accordingly, the applicant must demonstrate the following.

The proposed use of the data will promote American Indian and Alaska Native mental health, through improved detection, diagnosis, treatment, or prevention of mental illness or through contributing to our scientific understanding of these issues.Specifically, the applicant must demonstrate that the interests of American Indians and/or Alaska Natives are being served. In demonstrating the potential good for Indian and Native communities, consideration should be given to how the use of the data will have direct or indirect benefits. For example, the data may be analyzed and disseminated in such a way as to influence policy, to assist Indian Health Service Administrative Centers or Urban Indian Health Centers, to provide testimonials for congressional hearings, or to supply convincing evidence of need in proposal writing. Similarly, the data may allow the researcher to make recommendations directly to tribal governments, to specific groups within Indian communities (urban or rural), to Indian Health Service-Mental Health Service Units, or to schools.All proposals submitted will be reviewed in order to determine the appropriateness and feasibility of the proposed use of the data. It is expected that all analytic proposals will describe the purpose and the methods to be used in sufficient detail to allow the DAC to determine whether the methodology seems appropriate given the design of the original study. For example, if the purpose of requesting a particular dataset is to compare that data with data collected within, it would be important to explain the similarities and differences between the two data collection efforts so that the validity of the comparison could be assessed. Justification of analytic techniques or methodology will be expected if the proposed methodology is unusual, or if it was necessary to choose among several techniques as a means of answering a particular question.The scope of the proposed use of the data should be described in reasonable detail. This description should include information regarding the anticipated timeframe of the project and the necessary staff involvement (if the applicant knows that information) to allow DAC committee members to determine whether the goals of the proposed use of the data seem realistic and feasible in light of the resources available.

The proposed use of the data will not harm American Indian and Alaska Native individuals or communities.Specifically, applications will be reviewed for intent to adhere to any confidentiality commitments previously made to research communities and project participants. Applications will also be assessed for sensitivity to issues related to negative stereotypes and the role of research in counteracting such.

PRIORITY FOR DATA ACCESS

FIRST-LEVEL PRIORITYWe consider tribal governments as well as interested and established groups from the research communities to have the highest priority in having access to project data. In establishing the parameters for specific research projects, the National Center has made commitments to these communities to provide them with data they may request for their own purposes--for instance, demonstrating need for services in grant applications. We will respond to these kinds of requests the best we can, in light of often limited personnel.

SECOND-LEVEL PRIORITYWe consider both project personnel, and project subcontractors to have a high priority in having access to the data. Project personnel are defined as those directly involved in the completion of the project. Decisions on which analyses to pursue at this stage will be directed in large part by project goals: i.e., what analyses must get done and published in a timely manner to accomplish the goals agreed to by our funders or to lay the groundwork for later proposals, etc. Subcontractors responsible for data collection at the various sites will have equally high priority to site data for analyses specific to the location at which they worked.

THIRD-LEVEL PRIORITYWe consider National Center personnel and project consultants to have the next highest priority in having access to project data. Once tribal governments, community groups, project personnel, and project subcontractors have had the opportunity to make their requests, the data will be accessible to other NCAIANMHR staff. In order to maintain a cohesive program of research for each project, people interested in specific analyses will be asked to complete a request for data, present their ideas at a project staff meeting, and outline what resources they would need to complete these. Project personnel will then determine whether those resources are available and give the staff member a realistic estimate of the support they can offer. Consultants will have the same rights as Center personnel to pursue analyses not part of the stated program of research as specified in the grant application.

FOURTH-LEVEL PRIORITYOther UCDHSC faculty with NCAIANMHR affiliation, NCAIANMHR research associates, other researchers, and students will have a fourth level of priority. Requests for data access from these people will be subject to the external review process by the DAC.

APPLICATION PROCEDURE AND APPROVAL STIPULATIONS

The attached data request form needs to be completed and sent to the attention of the DAC coordinator Natasha Floersch. The DAC will be convened as needed for this review process. Adjunct members with direct interest and expertise in the area of the application may be invited to attend the review meeting.

A letter detailing the review results will be sent to the requester. If the request was denied, the concerns and reasons for the decision will be shared. In most cases, a resubmission will be encouraged after the expressed concerns of the DAC have been addressed.

If approved, a timeline will be negotiated for use of data for the particular project that was approved. After that time or if other requirements are not met, and after requester is informed, the DAC may give other applicants the option to begin the same data analysis. Applicants will also be given a schedule for required progress reports. A final report will also be required.

The DAC has final review of all formal presentations and papers submitted for publication using NCAIANMHR data. This is important so that we may review research conclusions for validity and to insure that they are correctly and appropriately presented. We also require acknowledgment of the NCAIANMHR for provision of the data in manuscripts, papers, and presentations of the analysis of data even if it also requires a disclaimer. In addition, Tribal approval may be required for publications and for presentations. The DAC will advise applicants when this approval is necessary.

A contract will be forwarded for signature. This contract will discuss requirements that both parties will agree upon before, during, and after use of the data requested. This includes among other things the acknowledgment of NCAIANMHR as well as the grant funding the particular data collection, adherence to confidentiality procedures for Indian/Native communities under study, agreement of reports due, and agreement to permit the NCAIANMHR's review of all final papers and presentations before submittal. The requester should expect to receive a copy of the data within 4-6 weeks after the National Center receives the signed contract.

DATA ACCESS REQUEST FORM

DISCLAIMER

As a part of being granted access to data obtained from the NCAIANMHR's database, the requester must agree to acknowledge both the appropriate funding source and the National Center specifically. In preparing publications/presentations from this data, the requester must keep in mind issues pertaining to confidentiality. No tribe, site, nor individual involved in the project may be referred to by proper name.